I thought life would slow down at least a little bit with the kids back in school, but not so.
We are definitely back in the routine of school -- uniforms, lunches, homework, etc. I thought I'd have a bit more 'free time' when the kids went back to school, but my days are typically filled. I'm doing projects around the house and working on keeping things 'on track'. After the kids are in bed, my mind is too tired to focus much on writing.
I've referenced before that I have to take things at a different pace than I used to -- I have to be careful to not use all my energy while the kids are at school, because there has to be enough of me left to finish out the day with them. Sometimes, that frustrates me -- I want to accomplish more at each setting, but I have to accept that this is my life circumstance, and I need to make the best of it.
Since my last post, my youngest turned 8 (and his arm has healed nicely). Last year, his birthday was surrounded by all of our transfer-to-hospice events; and those were the things he thought about when he thought about his birthday. I wanted to change that. It wasn't anything major, but I did do a little more than I normally do -- we needed to create new birthday memories. At the end of the day, he said to me, "This was the most special birthday - ever!" I am thankful for new memories.
The kids and I were also able to take a two-day trip to Duluth. None of us had ever been there, and the weather was perfect for our excursion. We were able to visit Spyglass Point, Palisade Head, and Gooseberry Falls. The second day, we were able to see the lift bridge, train museum, and visit some unique shops. It was a good trip.
I know I haven't written much specifically about grieving. Maybe I need to say something about that. I am not denying my grief, nor am I trying to come across as being unaffected by it - as 'having it all together'. The 'experts' will often say, grief is a very personal experience -- no two people experience it quite the same. I would add that each experience for the same person differs from another. Though losing my husband and being thrust into the category of single-parenthood are certainly 'firsts' for me, this is not my first experience with grief. I have lost others who were very dear to me, and I have grieved deeply. Through those other experiences, I learned lessons. Those realities affect how I am grieving this loss. I do grieve. I may just do it a little (or a lot) differently than the next person.
I mentioned previously (Marking Days) that I don't like remembering dates associated with difficult events, but it is a reality - and very much so lately. One year ago, we were experiencing difficult days. We were already under hospice care. Trent had worked his final days at his job. I knew when people called and asked to come visit that they were aware it may be the last time they would see him here on Earth. We were in our final days at home. Some days, I had to remind myself to breathe.
It's hard to believe that it has been nearly a year since the day that I was told we might have only hours left together. . . .
While I cannot prevent those memories from coming to mind, I have a choice regarding what I do with those memories. I could allow my mind to 'park' there; however, I don't believe that would be a beneficial choice. When those memories come, I accept that reality as part of my life story, and I direct my mind to focus on how we got through those days -- through acknowledging God's control over all those circumstances we couldn't control, and thanking Him for who He is and the fact that He never changes. He loves us, cares for us, and will never leave us -- and He has a plan for our lives. That discipline has been key to this journey. The tears come, but they don't stay. Psalm 30:5 -- ". . . weeping may endure for a night, but joy cometh in the morning."
I know of several people now facing difficult days -- some of them, it seems likely may end up losing their spouse. It is hard to see that. It's one thing for me to go through that -- it is another thing all together to watch someone else go through it. Just as for myself, sometimes I can't find words to put to my prayers for them. I am thankful our God knows our hearts, and He doesn't need our words in order to hear our prayers. I know this -- the same God who has walked with me in this journey will walk with them, too. The same peace and comfort and grace and presence that He has given me is available to them, as well. He is ". . . the God of all comfort; Who comforteth us . . ., that we may be able to comfort them . . . by the comfort wherewith we ourselves are comforted. . . ." (II Corinthians 1:3 - 4) God is faithful, and that will never change.
I am thankful God IS who He IS!
Showing posts with label Hard times. Show all posts
Showing posts with label Hard times. Show all posts
Saturday, October 18, 2014
Saturday, December 14, 2013
The End of the Path
The last several days were marked by consistent decline. The delirium had returned. Trent's overall condition was very much like the day I brought him to the hospital at the end of October. (End in Sight) There were also new issues that we did not deal with back then.
I let our pastor know. I called family. I sat with him - watching and listening. I watched for signs of discomfort because he wasn't able to articulate what he was feeling. I listened to his breathing. I listened to his words, most of which stemmed from the delirium. I tried to calm his frustrations that were coming from the strange messages his brain was sending him.
Yesterday was definitely a more difficult day. I knew we were incredibly close to the end. I did my best to keep him comfortable. The kids came for a brief visit.
I sat by his side during the night. I dozed off here and there. About 6:20 this morning, I was suddenly awake. I knew. Trent's suffering is finished. He rests in the arms of his Savior.
I called my pastor, and we made plans for meeting with the kids. There simply is no easy way to have that conversation, but it went as well as could be expected. I am grateful far beyond words for the incredible support of our pastor and his wife.
So far today, it has been all about the details. There are still many details to which I need to attend.
God has shown His incredible goodness and grace through all of this, including the timing and surrounding circumstances. He is good!
Thank you so much for all of your prayers.
I let our pastor know. I called family. I sat with him - watching and listening. I watched for signs of discomfort because he wasn't able to articulate what he was feeling. I listened to his breathing. I listened to his words, most of which stemmed from the delirium. I tried to calm his frustrations that were coming from the strange messages his brain was sending him.
Yesterday was definitely a more difficult day. I knew we were incredibly close to the end. I did my best to keep him comfortable. The kids came for a brief visit.
I sat by his side during the night. I dozed off here and there. About 6:20 this morning, I was suddenly awake. I knew. Trent's suffering is finished. He rests in the arms of his Savior.
I called my pastor, and we made plans for meeting with the kids. There simply is no easy way to have that conversation, but it went as well as could be expected. I am grateful far beyond words for the incredible support of our pastor and his wife.
So far today, it has been all about the details. There are still many details to which I need to attend.
God has shown His incredible goodness and grace through all of this, including the timing and surrounding circumstances. He is good!
Thank you so much for all of your prayers.
Thursday, November 14, 2013
A Time Like No Other
Little by little, I am seeing the confusion return.
Trent sleeps more and more and, at times, is harder to wake from sleep to give him his meds.
Some days, the increasing weakness is very noticeable.
Some of the staff are concerned at what they see, but then they don't know what to think when I tell them that we've been through worse before . . . .
These are the things that are hard to watch. I never know if I am seeing a temporary low or if this is a true decline.
I have no choice but to trust that God has a plan and that He will work it in His time.
As uncertain as each day may feel, it is comforting to know that God holds each moment in His control.
Each day truly is a gift.
There were changes for the kids this week. My sister needed to go home to her own family. I chose to split the kids and put them in homes where I felt they would have the best fit. They weren't sure about my choices when I told them initially, but they are doing well. I miss them. Seeing them for a few minutes each day is not the same as being home with them. I know this is not forever, but it is still hard.
As hard as this phase of life has been, it has also provided opportunities for reflection that I would have been otherwise too busy to take. I don't know if words will ever be able to adequately describe all that life is and has been over the past few months. As I sit here next to Trent, I can focus on the blessings that we often take for granted.
No matter the circumstances, it is beyond any doubt that we are blessed; and I am thankful.
Trent sleeps more and more and, at times, is harder to wake from sleep to give him his meds.
Some days, the increasing weakness is very noticeable.
Some of the staff are concerned at what they see, but then they don't know what to think when I tell them that we've been through worse before . . . .
These are the things that are hard to watch. I never know if I am seeing a temporary low or if this is a true decline.
I have no choice but to trust that God has a plan and that He will work it in His time.
As uncertain as each day may feel, it is comforting to know that God holds each moment in His control.
Each day truly is a gift.
There were changes for the kids this week. My sister needed to go home to her own family. I chose to split the kids and put them in homes where I felt they would have the best fit. They weren't sure about my choices when I told them initially, but they are doing well. I miss them. Seeing them for a few minutes each day is not the same as being home with them. I know this is not forever, but it is still hard.
As hard as this phase of life has been, it has also provided opportunities for reflection that I would have been otherwise too busy to take. I don't know if words will ever be able to adequately describe all that life is and has been over the past few months. As I sit here next to Trent, I can focus on the blessings that we often take for granted.
No matter the circumstances, it is beyond any doubt that we are blessed; and I am thankful.
Sunday, November 10, 2013
Shifting Steps
This has been quite a week, once again.
Our transition to the hospice was not easy. Almost immediately, we lost all pain and nausea control. The staff there really didn't seem concerned with what was best for Trent. They had their schedules and routines. I had absolutely no trust or confidence in the 'care' they were providing.
Their spiritual care director got involved and the social worker got involved. There were some changes made, but not enough to make me feel comfortable. When Trent voiced his desire to go elsewhere, that made the decision clear. On Tuesday, I had my sister come and sit with Trent for a couple of hours so I could go and see another facility. The difference in setting and philosophy could not have been greater. At the Lodge, they were amazed at some of the questions I asked and horrified that our experiences had made me feel it necessary to ask.
Jackie, the director at The Lodge, is all about getting things done, and - as promised - things were ready to move him within an hour. Trent was, of course, exhausted by the move; and Jackie's first priority was to get him into his bed and comfortable. After that was settled, then we focused on the paperwork. We are back under Methodist Home Hospice - just as we were before Trent was admitted; and that means we are back with the doctors and nurses that are already familiar with Trent. They sent a nurse out right away Tuesday night for a 'tuck-in check' to make sure that we had everything we needed for the night. The intake team came first thing Wednesday morning. Trent's doctor and his new nurse each came on Friday.
Trent has been so much more at ease here, and the pain is much better controlled. The nausea is much better, but not yet where we'd like it to be. Dr. Duane and I talked at length on Friday. We are going to watch closely for a couple more days and then re-evaluate. It feels so good to be working with people again who genuinely have Trent's comfort as their primary concern!
As far as the other facility, the social worker promises that changes will be made and that, as much as she hates what we have been through, our experience will enable them to force some changes that would have otherwise taken longer to make. I hope that is true.
We had a dear friend drive several hours to visit this week. It was a great blessing and encouragement.
There will be changes with the kids this week. My sister has been here staying with them, but she has her own family who miss her and need her. I know the kids will still be well cared for, but I see how all these things are affecting them. So many times, I wish I could be two places at once, but I can't.
Through all of the changes and difficulties, we still feel blessed. God has provided for all of our needs. He encourages us and strengthens us. He guides us and provides us with good counsel. He blesses us with good friends and family - both far and near. He gives us assurance that He is in control, that He has a plan, and that His way is best. He gives his grace for each moment that we face.
Our transition to the hospice was not easy. Almost immediately, we lost all pain and nausea control. The staff there really didn't seem concerned with what was best for Trent. They had their schedules and routines. I had absolutely no trust or confidence in the 'care' they were providing.
Their spiritual care director got involved and the social worker got involved. There were some changes made, but not enough to make me feel comfortable. When Trent voiced his desire to go elsewhere, that made the decision clear. On Tuesday, I had my sister come and sit with Trent for a couple of hours so I could go and see another facility. The difference in setting and philosophy could not have been greater. At the Lodge, they were amazed at some of the questions I asked and horrified that our experiences had made me feel it necessary to ask.
Jackie, the director at The Lodge, is all about getting things done, and - as promised - things were ready to move him within an hour. Trent was, of course, exhausted by the move; and Jackie's first priority was to get him into his bed and comfortable. After that was settled, then we focused on the paperwork. We are back under Methodist Home Hospice - just as we were before Trent was admitted; and that means we are back with the doctors and nurses that are already familiar with Trent. They sent a nurse out right away Tuesday night for a 'tuck-in check' to make sure that we had everything we needed for the night. The intake team came first thing Wednesday morning. Trent's doctor and his new nurse each came on Friday.
Trent has been so much more at ease here, and the pain is much better controlled. The nausea is much better, but not yet where we'd like it to be. Dr. Duane and I talked at length on Friday. We are going to watch closely for a couple more days and then re-evaluate. It feels so good to be working with people again who genuinely have Trent's comfort as their primary concern!
As far as the other facility, the social worker promises that changes will be made and that, as much as she hates what we have been through, our experience will enable them to force some changes that would have otherwise taken longer to make. I hope that is true.
We had a dear friend drive several hours to visit this week. It was a great blessing and encouragement.
There will be changes with the kids this week. My sister has been here staying with them, but she has her own family who miss her and need her. I know the kids will still be well cared for, but I see how all these things are affecting them. So many times, I wish I could be two places at once, but I can't.
Through all of the changes and difficulties, we still feel blessed. God has provided for all of our needs. He encourages us and strengthens us. He guides us and provides us with good counsel. He blesses us with good friends and family - both far and near. He gives us assurance that He is in control, that He has a plan, and that His way is best. He gives his grace for each moment that we face.
Thursday, October 31, 2013
Change of Venue
Today, I brought Trent to a hospice facility.
I struggled a little with this decision. I first had to reconcile to myself that I would have to make this decision without his input. I want to do what is best for Trent and what he wants. Those 2 things don't always mesh. I look at him and watch him grow weaker every day. I think about the logistics of our house - tiny doorways and walkways, tiny bathroom. I wonder how much weaker he will get before this is over. Even if I can handle his care now at home, will I be able to if he gets much weaker? Honestly, I just don't know. I see how hard even a little bit of noise and motion are on him, and I know it is not realistic to expect the kids to be silent and still all of the time they are home. There is also the factor that at home I am more than just total caregiver. I am also Mom, and there are dishes and laundry and phone calls and clutter and homework, etc. - all while keeping things quiet and still. When I am spread that thin, am I really doing anyone the good they need?
I know my kids need me. Trent needs me, too. I can meet my kids' needs and still have them feel secure using the help that has been offered to me. Trent has requested that I be with him - that is what makes him feel secure right now. His needs are for a brief season. I have put much prayer into my decisions and have gotten counsel. I know some people may disagree with my choices, but the fact is that I have to make the choices that I feel are best, and I am at peace with the decisions I have made.
The plans were set in place yesterday. The social worker ordered an ambulance transport, but when she said that, I saw a look on Trent's face that I really hate to see -- It was a look that tells me he feels things are being done to him rather than for him. He also thought that I was sending him away and not going with him. I stepped in and told her that I would bring him in our van. She really never agreed with me, but it is my choice; and I want to do what makes Trent feel the best as a whole - physically, mentally, and emotionally. Dr. Illig agreed with me, too.
I have had to talk with Trent several times about this decision -- he doesn't remember many conversations. I talked to Trent about the facility and told him I thought we should give it a try. I talked about the fact that it is a little bit more like home - definitely less clinical, but offers advantages we don't have at home -- an easy-to-maneuver set-up and less busy-ness. I did tell him that, if he really doesn't like it, we don't have to stay. I felt badly because he really never agreed to this - I think he just resigned himself to it.
Even though he has had much confusion lately, he was surprisingly lucid this morning. He could answer all of Dr. Illig's questions. He knew where we were going and why. He said to me, "So this is where I am going through the end of my life?" Oh, how I hated to answer that question! I answered that it did seem likely. Then he asked, "Is that why you've been so quiet about it?" I told him I had been quiet about it because, first of all I hated to see him upset about it; and the second reason is that I don't like to think about it because I will never be ready to say goodbye.
The emotional weight of the day has been great. The conversations were heavy. There was a great deal of finality in leaving the hospital. I really have no words to describe the emotions of bringing Trent here. Many times today I have cried out to God to strengthen me and to direct my focus and to rule my emotions.
I don't know that I've said it here, but I have told friends that this has been such a journey of trust and surrender. Trust that God has a plan, that He will give the grace and strength that I and the kids (and the rest of the family ) need, that He is in absolute control. Surrender of our plans, surrender to His will, and to His timing. When I purpose to trust and surrender, then I can have His peace. It is God's grace and peace that carry me through each day.
I struggled a little with this decision. I first had to reconcile to myself that I would have to make this decision without his input. I want to do what is best for Trent and what he wants. Those 2 things don't always mesh. I look at him and watch him grow weaker every day. I think about the logistics of our house - tiny doorways and walkways, tiny bathroom. I wonder how much weaker he will get before this is over. Even if I can handle his care now at home, will I be able to if he gets much weaker? Honestly, I just don't know. I see how hard even a little bit of noise and motion are on him, and I know it is not realistic to expect the kids to be silent and still all of the time they are home. There is also the factor that at home I am more than just total caregiver. I am also Mom, and there are dishes and laundry and phone calls and clutter and homework, etc. - all while keeping things quiet and still. When I am spread that thin, am I really doing anyone the good they need?
I know my kids need me. Trent needs me, too. I can meet my kids' needs and still have them feel secure using the help that has been offered to me. Trent has requested that I be with him - that is what makes him feel secure right now. His needs are for a brief season. I have put much prayer into my decisions and have gotten counsel. I know some people may disagree with my choices, but the fact is that I have to make the choices that I feel are best, and I am at peace with the decisions I have made.
The plans were set in place yesterday. The social worker ordered an ambulance transport, but when she said that, I saw a look on Trent's face that I really hate to see -- It was a look that tells me he feels things are being done to him rather than for him. He also thought that I was sending him away and not going with him. I stepped in and told her that I would bring him in our van. She really never agreed with me, but it is my choice; and I want to do what makes Trent feel the best as a whole - physically, mentally, and emotionally. Dr. Illig agreed with me, too.
I have had to talk with Trent several times about this decision -- he doesn't remember many conversations. I talked to Trent about the facility and told him I thought we should give it a try. I talked about the fact that it is a little bit more like home - definitely less clinical, but offers advantages we don't have at home -- an easy-to-maneuver set-up and less busy-ness. I did tell him that, if he really doesn't like it, we don't have to stay. I felt badly because he really never agreed to this - I think he just resigned himself to it.
Even though he has had much confusion lately, he was surprisingly lucid this morning. He could answer all of Dr. Illig's questions. He knew where we were going and why. He said to me, "So this is where I am going through the end of my life?" Oh, how I hated to answer that question! I answered that it did seem likely. Then he asked, "Is that why you've been so quiet about it?" I told him I had been quiet about it because, first of all I hated to see him upset about it; and the second reason is that I don't like to think about it because I will never be ready to say goodbye.
The emotional weight of the day has been great. The conversations were heavy. There was a great deal of finality in leaving the hospital. I really have no words to describe the emotions of bringing Trent here. Many times today I have cried out to God to strengthen me and to direct my focus and to rule my emotions.
I don't know that I've said it here, but I have told friends that this has been such a journey of trust and surrender. Trust that God has a plan, that He will give the grace and strength that I and the kids (and the rest of the family ) need, that He is in absolute control. Surrender of our plans, surrender to His will, and to His timing. When I purpose to trust and surrender, then I can have His peace. It is God's grace and peace that carry me through each day.
Tuesday, October 29, 2013
Slow Steps
Things have not changed a lot in the past few days. There is no schedule for this time of life - and they tell me that is even more the case with a younger person. It is just 'wait and see'. I'm certainly not rushing things.
Trent had quite a few visitors over the weekend. Some of them, he just slept through the visit, which is fine.
I was supposed to decide today about taking him home or moving him to a hospice facility. I really felt like it was not the right time to make that decision. I felt like I didn't have enough to go on to make it today. When Dr. Illig found out how I was feeling, she said to postpone a decision until Wednesday when she is back at work. I was thankful for that.
We did discuss, though, the fact that I would like a different Hospice nurse assigned to Trent if we do go home. There have been a couple of things that weren't the best with this last one; but the biggest factor was that Trent was no longer comfortable with her. I could work with and around her if I needed to do so, but Trent has to be comfortable with the person caring for him. It was time for a change.
Trent's confusion remains - I'm guessing it will stay that way. It varies in intensity and topic. I wonder if part of it comes from the struggle with and against the reality of what Trent is facing right now. I am doing my best to answer the questions he has as delicately and as positively as possible. It is not always easy. When my answers don't satisfy him, he becomes more frustrated and upset.
God's grace is sustaining us through these days. He strengthens us when we have no strength of our own. He gives us amazing peace in a time that can feel so tumultuous. I am thankful that I can trust Him with all of the aspects of life -- all of the things that are out of my control are completely in His control. I am thankful for God's goodness.
Trent had quite a few visitors over the weekend. Some of them, he just slept through the visit, which is fine.
I was supposed to decide today about taking him home or moving him to a hospice facility. I really felt like it was not the right time to make that decision. I felt like I didn't have enough to go on to make it today. When Dr. Illig found out how I was feeling, she said to postpone a decision until Wednesday when she is back at work. I was thankful for that.
We did discuss, though, the fact that I would like a different Hospice nurse assigned to Trent if we do go home. There have been a couple of things that weren't the best with this last one; but the biggest factor was that Trent was no longer comfortable with her. I could work with and around her if I needed to do so, but Trent has to be comfortable with the person caring for him. It was time for a change.
Trent's confusion remains - I'm guessing it will stay that way. It varies in intensity and topic. I wonder if part of it comes from the struggle with and against the reality of what Trent is facing right now. I am doing my best to answer the questions he has as delicately and as positively as possible. It is not always easy. When my answers don't satisfy him, he becomes more frustrated and upset.
God's grace is sustaining us through these days. He strengthens us when we have no strength of our own. He gives us amazing peace in a time that can feel so tumultuous. I am thankful that I can trust Him with all of the aspects of life -- all of the things that are out of my control are completely in His control. I am thankful for God's goodness.
Saturday, October 26, 2013
When the End of the Path is in Sight
It appears that the end of this path may be in sight. I don't like to look ahead to it.
This week brought changes again. On Sunday and Monday, Trent was still recovering from the high doses of medication he had been given on Saturday. We continued this week trying to manage the nausea and vomiting.
Wednesday night, Trent was insistent that he was going to church. Considering how the day had been and how he was feeling, I thought he would give up on that idea. He was adamant that he wanted to go. I had my doubts as to his strength to be able to go, but since he was so determined, I decided I would do my best to make it happen. We arrived late and left during closing prayer. Trent was absolutely, completely wiped out from the effort.
Thursday morning, Trent was still exhausted, and I expected that.
Thursday night things changed. Trent went from his state of being sleepy and 'loopy' from the medication to being severely confused. There was also a definite change in his eyes. On Friday morning, he was still severely confused, but he was also unsteady and very emotional.
Trent was scheduled for more IV fluids on Friday, and he said he wanted to try to make that appointment. We had his usual infusion nurse, Heidi, and she was visibly taken back by the change in him. She started his IV, and we talked. For some reason, the Hospice nurse was delaying calling me back; and that did not set well with Heidi. Heidi got the Hospice nurse on the phone, and I could hear her as she told the Hospice nurse that she MUST get someone out there to evaluate Trent that day! Heidi walked us out to our van and offered to step in if our Hospice nurse did not take action.
In summary, the nurse did come to the house and the decision was made to have Trent admitted for evaluation. My biggest issue was wanting to know where we were in this. The nurse had her opinion; down to the very core of my being, I felt differently. I was glad we were going in.
Hospice admits directly, so we did not have to go to the ER or stand and wait in the Admitting line. We arrived, and I brought Trent directly to the floor. We were greeted by familiar faces.
The Lord worked things so beautifully! Our regular Palliative doctor, Dr. Illig, 'happened' to be the one on call for the weekend, and she just 'happened' to be on the floor when we arrived. When she saw Trent's name, she came right to us -- she was in our room within minutes. Trent was pleased when he saw her. We talked about what had been going on. Then she asked me to step in to the hallway to talk. Her 'gut' feeling is that we have entered an active end-of-life stage, and she believes we are looking at anywhere from hours to days.
I started making phone calls -- our pastor, Trent's dad and brothers, my sister, and one of Trent's best friends from college. I made sure my sister was bringing the children up to the hospital.
When the kids arrived, I told them that Dr. Illig had been in to see Daddy and that she just doesn't know how much more Daddy's body can take because it has been through so much and had gotten so weak. (The conversations you never imagine having . . . .)
Trent's parents and brothers were able to come to the hospital as well as one of his uncles and an aunt. There were tears and prayers and serious things -- and even a little laughter.
Trent was so very tired, and I encouraged him to lie back and sleep. He told me he didn't want to sleep because he didn't know if he would wake up. I reminded him that he will wake up -- it is just a matter of whether he will wake up here with his family or in Heaven with his Savior.
I sat by Trent's side all through the night. I dozed off a few times, but mostly I sat and listened to his breathing.
Today is a day of just 'sitting tight'. We wait to see what the day will bring. We feel loved by friends and family both here and far away. We trust in our God and rest in His plan and in His peace and comfort.
This week brought changes again. On Sunday and Monday, Trent was still recovering from the high doses of medication he had been given on Saturday. We continued this week trying to manage the nausea and vomiting.
Wednesday night, Trent was insistent that he was going to church. Considering how the day had been and how he was feeling, I thought he would give up on that idea. He was adamant that he wanted to go. I had my doubts as to his strength to be able to go, but since he was so determined, I decided I would do my best to make it happen. We arrived late and left during closing prayer. Trent was absolutely, completely wiped out from the effort.
Thursday morning, Trent was still exhausted, and I expected that.
Thursday night things changed. Trent went from his state of being sleepy and 'loopy' from the medication to being severely confused. There was also a definite change in his eyes. On Friday morning, he was still severely confused, but he was also unsteady and very emotional.
Trent was scheduled for more IV fluids on Friday, and he said he wanted to try to make that appointment. We had his usual infusion nurse, Heidi, and she was visibly taken back by the change in him. She started his IV, and we talked. For some reason, the Hospice nurse was delaying calling me back; and that did not set well with Heidi. Heidi got the Hospice nurse on the phone, and I could hear her as she told the Hospice nurse that she MUST get someone out there to evaluate Trent that day! Heidi walked us out to our van and offered to step in if our Hospice nurse did not take action.
In summary, the nurse did come to the house and the decision was made to have Trent admitted for evaluation. My biggest issue was wanting to know where we were in this. The nurse had her opinion; down to the very core of my being, I felt differently. I was glad we were going in.
Hospice admits directly, so we did not have to go to the ER or stand and wait in the Admitting line. We arrived, and I brought Trent directly to the floor. We were greeted by familiar faces.
The Lord worked things so beautifully! Our regular Palliative doctor, Dr. Illig, 'happened' to be the one on call for the weekend, and she just 'happened' to be on the floor when we arrived. When she saw Trent's name, she came right to us -- she was in our room within minutes. Trent was pleased when he saw her. We talked about what had been going on. Then she asked me to step in to the hallway to talk. Her 'gut' feeling is that we have entered an active end-of-life stage, and she believes we are looking at anywhere from hours to days.
I started making phone calls -- our pastor, Trent's dad and brothers, my sister, and one of Trent's best friends from college. I made sure my sister was bringing the children up to the hospital.
When the kids arrived, I told them that Dr. Illig had been in to see Daddy and that she just doesn't know how much more Daddy's body can take because it has been through so much and had gotten so weak. (The conversations you never imagine having . . . .)
Trent's parents and brothers were able to come to the hospital as well as one of his uncles and an aunt. There were tears and prayers and serious things -- and even a little laughter.
Trent was so very tired, and I encouraged him to lie back and sleep. He told me he didn't want to sleep because he didn't know if he would wake up. I reminded him that he will wake up -- it is just a matter of whether he will wake up here with his family or in Heaven with his Savior.
I sat by Trent's side all through the night. I dozed off a few times, but mostly I sat and listened to his breathing.
Today is a day of just 'sitting tight'. We wait to see what the day will bring. We feel loved by friends and family both here and far away. We trust in our God and rest in His plan and in His peace and comfort.
Tuesday, October 22, 2013
Candid Thoughts
For the general public, I am an emotionally-reserved person. Some people have said that I never cry or that things never bother me. I even had one person comment that I had been totally unaffected by all of the events of this year with my husband -- nothing could be further from the truth.
I thought maybe it could be a help to someone else to know some of these things that I have gone through thus far.
When the comment was made (and it was said ever so kindly and appropriately) that help was being offered so others could do for my children what I could not do for them right now, it did hurt. The fact is that what it hurt was my pride. Pride separates us from others, but worse than that is the fact that pride separates us from and puts us at odds with God -- that's not a place I want to be. I choose to lay aside that pride and be genuinely thankful for what is being done for me.
The times that I fail are really no different than any other point in life. I have to ask forgiveness, do my best to make things right, and move forward. Period.
When I am overwhelmed and it feels too hard, those are the moments when I must shift my focus upward. I cry out to God -- it may be just a simple, "Dear God, please help me!" or "Lord, I need Your strength because I just don't have any of my own!" I thank God for giving us today and try very hard to find blessings in the day and the moments.
There have been several points in time when I have told the Lord that I don't want to do this! However, my heart's desire is to live a life pleasing to Him. So, I follow that statement with, "If I must walk this path, then help me to do so in a way that honors You." I know that, if God has this path for me to walk, then He will give me the strength to do it if I just stay close to Him.
When people say or do things that hurt, I do my absolute best to just let it go. I have asked for help in situations where a person just maybe needs to hear it from a different perspective. In the end, though, my goal is to extend grace to people. I'm not perfect, either, and I'm absolutely sure that I don't always say or do the right things. We all need grace. And, if, maybe someone truly was being unkind, well -- that's not my problem. Only God knows a person's heart, and that is His place to take care of a problem there.
Even though it is hard when people distance themselves, I don't hold that against anyone. I do understand that each person has their own set of circumstances they are dealing with and that it is simply too much at times to add to the burden they are already carrying. One very dear friend admitted that they needed to distance themselves a little because it hasn't been too terribly long since they had a loss in their family, and our current experiences have caused them to feel that grief all over again. I understand that. I think it took a lot for this friend to open up about that, too. It is a growing process for all.
The conversations about 'the natural progression of things' are sometimes necessary, I suppose, to some degree at least and from certain sources. It doesn't make it any easier to hear, and it doesn't make me want to hear it any more. It's just one of those really tough things about this journey.
The emotions are a very big part of this journey, and I know they will come in varying forms. Fear is natural, but what I do with that fear is what is most important. When I turn that fear over to God and replace that fear with trust, then I can have peace. When I let the fears have free course, that's when the panic hits. I do have questions about what the future holds, but I cannot let fear reign. I told my husband a few months ago that I was confident that, just as God has a plan for his life, He has a plan for me and the kids, too. I do not believe that God wants our lives ruled by fear, and it is an active choice to trust and not fear.
When I feel like a failure, I need to check my perspectives. It may be that I have failed in an area that I can correct. If that is the case, then I need to make those corrections. Sometimes, though, those feelings are because my expectations are not what they should be. Way back when this all started - long before we knew what we would be facing now - my dear friend Francie said to me that I would need to learn to accept 'good enough as good enough', that this is not 'normal life'. There are many things I wish I could change that I simply cannot. I am doing my best to balance the things I must take care of. There are many things that I cannot take care of the way I would like to or the way I have in the past. I don't have the time to spend with my children that I really wish I could, so I do the best I can to still make life enjoyable for them and to make the moments that I do have with them moments that really count. Life isn't 'ideal' right now, but it is where God has placed us, and He has a purpose for doing so. I want to learn the lessons He has for me, and I want to help my children learn about God's love and grace through this, as well.
It is true that there have been many tough moments along this path, but God's goodness has been right there, too, and there is much for which to be thankful. I am thankful for God's grace and patience and forgiveness. I am thankful for His ever-constant presense -- He has never left us alone. I am thankful that He loves me in spite of my failures. I am thankful, too, for those that He has put in our lives who have walked along side us in this journey thus far. God has been so good to us, and I feel blessed beyond measure.
I thought maybe it could be a help to someone else to know some of these things that I have gone through thus far.
- I am absolutely human in every way. There is no item in my wardrobe containing a large S on the chest. If there were such an item, it would be in the wrong home. It is true that I am, by nature, strong willed and independent and a care-taker and a problem-solver. But . . . just like anyone else, I have emotions, and I have 'limits', and my strength fails -- I fail.
- Some days, I do feel overwhelmed!
- Some days, it feels too hard! There are moments when I feel, "I can't do this!" Later, I look back and feel so stupid for feeling that way because I have to do it -- it's not a choice.
- I don't want to do this!
- It hurts me greatly when people are harsh with me or my kids. I already know I'm not perfect. My kids aren't perfect, either -- I know that, too. Yes, I absolutely want them to be well behaved and to obey, and I don't want to make excuses for bad behavior, BUT sometimes, I just want to say to people, "REALLY?? You can't extend them (me) just a little bit of grace right now? Do you realize at all what we are dealing with?"
- It is hard when people distance themselves. I know sometimes it is just circumstances. Sometimes it is because they don't know what to say or do. Sometimes they feel badly because their situation turned out differently than ours.
- It absolutely rips my heart out when people reference 'the natural progression of things' or the fact that things are 'just to be expected.' I'm not in denial, I just really don't want to think about it all the time or have people talk about it. The same goes for references to life on the other side of this situation.
- There are times I experience fear. There have been some moments when that fear has resulted in feeling panic.
- I feel like a failure. I can't do for my husband what I want to do - to fix it. I can't do for my children what I want to do and feel I need to do. Things have been set in place to do for my kids the things I can't do for them right now. (Where is that shirt with the big 'S' when I need it?) There are things that we have done as tradition that we can't do right now. As much as I try to keep things as normal as possible, the fact is that I can't keep it normal because life simply is NOT normal right now.
When the comment was made (and it was said ever so kindly and appropriately) that help was being offered so others could do for my children what I could not do for them right now, it did hurt. The fact is that what it hurt was my pride. Pride separates us from others, but worse than that is the fact that pride separates us from and puts us at odds with God -- that's not a place I want to be. I choose to lay aside that pride and be genuinely thankful for what is being done for me.
The times that I fail are really no different than any other point in life. I have to ask forgiveness, do my best to make things right, and move forward. Period.
When I am overwhelmed and it feels too hard, those are the moments when I must shift my focus upward. I cry out to God -- it may be just a simple, "Dear God, please help me!" or "Lord, I need Your strength because I just don't have any of my own!" I thank God for giving us today and try very hard to find blessings in the day and the moments.
There have been several points in time when I have told the Lord that I don't want to do this! However, my heart's desire is to live a life pleasing to Him. So, I follow that statement with, "If I must walk this path, then help me to do so in a way that honors You." I know that, if God has this path for me to walk, then He will give me the strength to do it if I just stay close to Him.
When people say or do things that hurt, I do my absolute best to just let it go. I have asked for help in situations where a person just maybe needs to hear it from a different perspective. In the end, though, my goal is to extend grace to people. I'm not perfect, either, and I'm absolutely sure that I don't always say or do the right things. We all need grace. And, if, maybe someone truly was being unkind, well -- that's not my problem. Only God knows a person's heart, and that is His place to take care of a problem there.
Even though it is hard when people distance themselves, I don't hold that against anyone. I do understand that each person has their own set of circumstances they are dealing with and that it is simply too much at times to add to the burden they are already carrying. One very dear friend admitted that they needed to distance themselves a little because it hasn't been too terribly long since they had a loss in their family, and our current experiences have caused them to feel that grief all over again. I understand that. I think it took a lot for this friend to open up about that, too. It is a growing process for all.
The conversations about 'the natural progression of things' are sometimes necessary, I suppose, to some degree at least and from certain sources. It doesn't make it any easier to hear, and it doesn't make me want to hear it any more. It's just one of those really tough things about this journey.
The emotions are a very big part of this journey, and I know they will come in varying forms. Fear is natural, but what I do with that fear is what is most important. When I turn that fear over to God and replace that fear with trust, then I can have peace. When I let the fears have free course, that's when the panic hits. I do have questions about what the future holds, but I cannot let fear reign. I told my husband a few months ago that I was confident that, just as God has a plan for his life, He has a plan for me and the kids, too. I do not believe that God wants our lives ruled by fear, and it is an active choice to trust and not fear.
When I feel like a failure, I need to check my perspectives. It may be that I have failed in an area that I can correct. If that is the case, then I need to make those corrections. Sometimes, though, those feelings are because my expectations are not what they should be. Way back when this all started - long before we knew what we would be facing now - my dear friend Francie said to me that I would need to learn to accept 'good enough as good enough', that this is not 'normal life'. There are many things I wish I could change that I simply cannot. I am doing my best to balance the things I must take care of. There are many things that I cannot take care of the way I would like to or the way I have in the past. I don't have the time to spend with my children that I really wish I could, so I do the best I can to still make life enjoyable for them and to make the moments that I do have with them moments that really count. Life isn't 'ideal' right now, but it is where God has placed us, and He has a purpose for doing so. I want to learn the lessons He has for me, and I want to help my children learn about God's love and grace through this, as well.
It is true that there have been many tough moments along this path, but God's goodness has been right there, too, and there is much for which to be thankful. I am thankful for God's grace and patience and forgiveness. I am thankful for His ever-constant presense -- He has never left us alone. I am thankful that He loves me in spite of my failures. I am thankful, too, for those that He has put in our lives who have walked along side us in this journey thus far. God has been so good to us, and I feel blessed beyond measure.
Sunday, October 20, 2013
Maintaining the Course
This week was more difficult for managing symptoms than we have faced lately. Over the course of the week, Trent's nausea and vomiting became less and less controlled. We tried yet another medication which did not seem to help at all. Trent had still been able to keep down his pain meds and so things were somewhat okay on that level -- until yesterday. When the pain meds won't stay down, and we get several hours behind, then things start to spiral downward at a terrible pace.
I was thankful that my brother in law had arranged for the kids to be with another family for a few hours. That way, the kids didn't have to see how bad off Trent got, and I could focus solely on trying to help Trent.
We tried several things - all to no avail. I decided to call the on-call Hospice nurse. She gave me instructions on using the concentrated liquid meds we had been given when we signed up with Hospice, and I did as instructed. However, an hour later, he was still in agony. I called back and she told me that she would be on her way to the house as quickly as she could.
She did arrive in a relatively short time, and she got right to work. She said she was going to hit this hard with meds to get it under control, and then we would talk about maintaining. Between what she had me give him an hour before and what she gave to him when she arrived, the concentration was many times more than what he would normally have, but it did get the pain under control.
Once Trent's body had settled, she and I sat down to talk. We are switching approaches to pain meds. We are now using as few pills as possible and, instead, giving concentrated liquids. Since the nausea and vomiting has been so hard to control, this approach requires less to actually have to go into the stomach and should, therefore, be less irritating. I was also given much higher limits for the medications than I had been instructed to give prior to this point.
After all was said and done, the adrenaline level dropped, and I felt like I'd been hit by a truck. The emotional and mental drain of the day was taking its effect. I am thankful for God's strength to get through the 'crisis' moments.
As much as I had hoped we wouldn't end up in another 'pain crisis', I am extremely thankful for the benefits of Hospice care. Without that, we would have been back in the ER, and possibly back in the hospital. This way, I did not have to transport Trent anywhere, and we are home today. I feel blessed.
Trent has been pretty out of it today - I fully expected that knowing how the one medication affects him and knowing how much he was given. His head is a little more clear this evening, and that is good. I just hope he was awake enough this evening that he will sleep tonight. I'm hoping the kids will sleep tonight, too. This Mama could use a decent night's sleep.
Psalm 4:8 I will both lay me down in peace, and sleep: for thou, LORD, only makest me dwell in safety.
I was thankful that my brother in law had arranged for the kids to be with another family for a few hours. That way, the kids didn't have to see how bad off Trent got, and I could focus solely on trying to help Trent.
We tried several things - all to no avail. I decided to call the on-call Hospice nurse. She gave me instructions on using the concentrated liquid meds we had been given when we signed up with Hospice, and I did as instructed. However, an hour later, he was still in agony. I called back and she told me that she would be on her way to the house as quickly as she could.
She did arrive in a relatively short time, and she got right to work. She said she was going to hit this hard with meds to get it under control, and then we would talk about maintaining. Between what she had me give him an hour before and what she gave to him when she arrived, the concentration was many times more than what he would normally have, but it did get the pain under control.
Once Trent's body had settled, she and I sat down to talk. We are switching approaches to pain meds. We are now using as few pills as possible and, instead, giving concentrated liquids. Since the nausea and vomiting has been so hard to control, this approach requires less to actually have to go into the stomach and should, therefore, be less irritating. I was also given much higher limits for the medications than I had been instructed to give prior to this point.
After all was said and done, the adrenaline level dropped, and I felt like I'd been hit by a truck. The emotional and mental drain of the day was taking its effect. I am thankful for God's strength to get through the 'crisis' moments.
As much as I had hoped we wouldn't end up in another 'pain crisis', I am extremely thankful for the benefits of Hospice care. Without that, we would have been back in the ER, and possibly back in the hospital. This way, I did not have to transport Trent anywhere, and we are home today. I feel blessed.
Trent has been pretty out of it today - I fully expected that knowing how the one medication affects him and knowing how much he was given. His head is a little more clear this evening, and that is good. I just hope he was awake enough this evening that he will sleep tonight. I'm hoping the kids will sleep tonight, too. This Mama could use a decent night's sleep.
Friday, September 27, 2013
Contrary Winds
I have been quiet on here lately because our circumstances have been a bit tough. I needed to get some things taken care of before I could share with people in general.
I will spare you all the details, but I will summarize by saying that Trent's care has been transferred to a Hospice team.
Our pastor met with us, as a family, to talk to the kids this week. I explained to them that the cancer was growing fast and that Dad's doctors were concerned. I told them that we would be having a "Hospice Nurse" come to the house and explained that these nurses are specially trained to help people feel as good as they can for as long as they can through the end of life. I reminded them that God is still in control - no matter the outcome, and that He loves them so very much. I told them I wanted them to know that, even though there will be tough days, they can trust that God will give them grace and strength for each step we have to take. I reminded them, too, that no one knows how long any of us has to live, but that each day we have is a gift from God and we need to live it the very best we can. As difficult as that conversation was to have, I really couldn't have asked for it to go any better than it did. I am grateful, too, for a pastor who takes the time and makes the effort to make sure our kids know how much he loves them and cares for our family.
After we had talked with the kids, we talked to the rest of the family. We then began letting others know, as well.
Thursday of this week was the day that we signed the paperwork for Hospice. Trent was uncomfortable with pain, and he asked me to sign for him. Some were no big deal, but some of those were papers I really did not want to sign. And then there is the POLST order. It ensures that, when the time comes, there will be no questions asked and no investigation, and it is to remain visible in the home. A constant reminder . . . .
It was nice, though, how quickly the Hospice team sets things in motion. Before we had even gotten the paperwork signed, our sweet nurse, Jenna, was on the phone with the Hospice physician asking for new orders to better manage Trent's pain and nausea. Within 15 minutes, the medication orders were in and scheduled to be delivered by courier.
Hospice offers several benefits. It means we no longer have to travel to appointments and get prescriptions on paper. There are no more trips to the pharmacy - not even for the over-the-counter meds like Prilosec or Miralax -- all of these items will be delivered by courier directly from the hospital. It means much more aggressive treatment of symptoms and more liberal dosing of medications. It means no more trips to the ER. It means that, if he gets in another 'pain crisis', we will have immediate help at our fingertips.
The past couple of weeks have been intense emotionally. There have been moments when I felt I couldn't go through what I was facing, but I have to remind myself of what I already know -- God will give me His strength when mine fails. The weaker I am, the more He can perfect His strength in me. My independent spirit doesn't like feeling weak. The more submissive side of me knows it is okay as long I seek strength from the right source.
As difficult as some of the moments have been recently, I still know that God is in control and that He has a purpose for every part of this. I want to walk this path in such a way that God's love and grace are allowed to shine through the circumstances, drawing people to Him.
I will spare you all the details, but I will summarize by saying that Trent's care has been transferred to a Hospice team.
Our pastor met with us, as a family, to talk to the kids this week. I explained to them that the cancer was growing fast and that Dad's doctors were concerned. I told them that we would be having a "Hospice Nurse" come to the house and explained that these nurses are specially trained to help people feel as good as they can for as long as they can through the end of life. I reminded them that God is still in control - no matter the outcome, and that He loves them so very much. I told them I wanted them to know that, even though there will be tough days, they can trust that God will give them grace and strength for each step we have to take. I reminded them, too, that no one knows how long any of us has to live, but that each day we have is a gift from God and we need to live it the very best we can. As difficult as that conversation was to have, I really couldn't have asked for it to go any better than it did. I am grateful, too, for a pastor who takes the time and makes the effort to make sure our kids know how much he loves them and cares for our family.
After we had talked with the kids, we talked to the rest of the family. We then began letting others know, as well.
Thursday of this week was the day that we signed the paperwork for Hospice. Trent was uncomfortable with pain, and he asked me to sign for him. Some were no big deal, but some of those were papers I really did not want to sign. And then there is the POLST order. It ensures that, when the time comes, there will be no questions asked and no investigation, and it is to remain visible in the home. A constant reminder . . . .
It was nice, though, how quickly the Hospice team sets things in motion. Before we had even gotten the paperwork signed, our sweet nurse, Jenna, was on the phone with the Hospice physician asking for new orders to better manage Trent's pain and nausea. Within 15 minutes, the medication orders were in and scheduled to be delivered by courier.
Hospice offers several benefits. It means we no longer have to travel to appointments and get prescriptions on paper. There are no more trips to the pharmacy - not even for the over-the-counter meds like Prilosec or Miralax -- all of these items will be delivered by courier directly from the hospital. It means much more aggressive treatment of symptoms and more liberal dosing of medications. It means no more trips to the ER. It means that, if he gets in another 'pain crisis', we will have immediate help at our fingertips.
The past couple of weeks have been intense emotionally. There have been moments when I felt I couldn't go through what I was facing, but I have to remind myself of what I already know -- God will give me His strength when mine fails. The weaker I am, the more He can perfect His strength in me. My independent spirit doesn't like feeling weak. The more submissive side of me knows it is okay as long I seek strength from the right source.
As difficult as some of the moments have been recently, I still know that God is in control and that He has a purpose for every part of this. I want to walk this path in such a way that God's love and grace are allowed to shine through the circumstances, drawing people to Him.
Sunday, August 25, 2013
Ebb and Flow
Ebb and Flow. That really describes all of life, I suppose; but it is more noticeable during times like this. The ups and downs, highs and lows, blessings and trials, the calm and the stress are all more prominent right now.
This has been quite a week. We met with the Palliative doctor. She was very kind and compassionate. She spent a long time with us. We came up with a new plan for attacking the pain; but with the new plan, there has been a transition time. The transition hasn't been easy. She told us it would take 3 - 7 days for blood levels to increase to where they need to be and then even out. We were hoping for 3 days -- it seems that we're looking at 7 days. About half of last night was spent in the ER trying to get relief.
It is hard to know what to do when it comes to helping Trent sometimes. I want to do all I can to help him feel better, but I don't want to hover. There are times when he will tell me what he wants me to do (or not do). Other times, he is hurting too much or the meds have fogged his mind too much to be able to communicate effectively with me, and I just have to try to make the best decision I can.
We started school this week, too. That has had its ebbs and flows, too. One child plows ahead, one seems to be going along fairly willingly, and one is resistant. I'm praying for some things to level off in this area, too.
Work had definite ups and downs this weekend, too. I was unable to work last night due to being with Trent at the ER. During my Friday over-night shift, we had a guest pass away. Working at a hotel, I've always known it was a possibility to face that at work, but this was the first actual encounter. I wonder if he had a relationship with God.
This coming week is filled with extra appointments again (plus school). Trent has a new CT scan on Tuesday, and we will get the results on Thursday. It is a strange balance to try to strike when thinking about the scans. On the one hand, we try to be prepared for the results -- no matter what they may be. We don't want to have the wind knocked out of us, so to speak, if the results are 'unfavorable'. On the other hand, we don't want to speculate (or worry) about what they may be. We know the results are in God's control. We desire to rest in that knowledge. It is an exercise in faith and trust to keep the mind from wandering too far . . . .
A new week. Both old and new challenges. One day at a time. Ebb and flow. Faith and Trust.
This has been quite a week. We met with the Palliative doctor. She was very kind and compassionate. She spent a long time with us. We came up with a new plan for attacking the pain; but with the new plan, there has been a transition time. The transition hasn't been easy. She told us it would take 3 - 7 days for blood levels to increase to where they need to be and then even out. We were hoping for 3 days -- it seems that we're looking at 7 days. About half of last night was spent in the ER trying to get relief.
It is hard to know what to do when it comes to helping Trent sometimes. I want to do all I can to help him feel better, but I don't want to hover. There are times when he will tell me what he wants me to do (or not do). Other times, he is hurting too much or the meds have fogged his mind too much to be able to communicate effectively with me, and I just have to try to make the best decision I can.
We started school this week, too. That has had its ebbs and flows, too. One child plows ahead, one seems to be going along fairly willingly, and one is resistant. I'm praying for some things to level off in this area, too.
Work had definite ups and downs this weekend, too. I was unable to work last night due to being with Trent at the ER. During my Friday over-night shift, we had a guest pass away. Working at a hotel, I've always known it was a possibility to face that at work, but this was the first actual encounter. I wonder if he had a relationship with God.
This coming week is filled with extra appointments again (plus school). Trent has a new CT scan on Tuesday, and we will get the results on Thursday. It is a strange balance to try to strike when thinking about the scans. On the one hand, we try to be prepared for the results -- no matter what they may be. We don't want to have the wind knocked out of us, so to speak, if the results are 'unfavorable'. On the other hand, we don't want to speculate (or worry) about what they may be. We know the results are in God's control. We desire to rest in that knowledge. It is an exercise in faith and trust to keep the mind from wandering too far . . . .
A new week. Both old and new challenges. One day at a time. Ebb and flow. Faith and Trust.
Friday, August 16, 2013
Plodding Along
More times than I can count, I have said that we are taking life, "One day at a time." We really are doing our best to do just that -- to live today as God has given it to us.
In a sense, though, so much of life now feels like we are living in a holding pattern. It seems we are always waiting -- waiting for the next appointment; waiting for the next scan; etc. Right now, we are waiting for an appointment with the Palliative Care doctor. I would like to see what options we can have for non-narcotic pain control. Our oncologist said that she is well versed in narcotics, but beyond that is outside of her expertise; however, she agreed to give us the referral to the Palliative Care group so we could explore other options. And so, we wait -- the earliest we could get in to see her is the 21st -- one more week.
Then, we wait for a new scan. That is scheduled for the last week of this month. After the scan, we wait a couple of days for the results. Wait.
In this stage of life, there is a completely different perspective that goes along with the second half of Proverbs 27:1 where it says, "for thou knowest not what a day may bring forth." We have to take each day as it comes, and not a moment before. We never know whether we will be waking up to a good day physically for Trent or a rough one. We don't know until the moments arrive whether his pain meds will be able to squelch the pain or if the pain will trump the meds.
We are making plans for our days as best as we can -- always allowing for the unknown. One of the plans we have laid is the starting of school. We are scheduled to start next Tuesday. The plan is to start light -- just three days the first week, and easy days at that; but then the plan is for a full schedule. That may have to change. To be totally candid, it isn't easy to follow through with this particular plan. The thought of adding one more thing (and a big thing at that) to our daily life right now is a bit overwhelming. I have to remind myself to just focus on the next step.
Right now, it is all we can do to plan for Trent's appointments, for work, for church, and for school. Everything else has to be considered 'optional' -- a luxury. It's just the way life is right now.
One of my children let me know this week that life isn't what they want right now. Part of me wants to say, "Get used to it -- That's life!", but I know this season of life hasn't been easy on them, either. However, the reality is just that -- This is life right now, and we can't change it. We can only work on doing the best we can and to keep our focus on God and on what is good. Said child and I discussed focusing on the blessings. He came up with many negatives -- I tried to counter them with positives. Even though some of our days may be rough, there really are so many blessings. God has been providing for our needs. We have good friends who give of their time to help us. We have employers who have been more than understanding. It is easy to look at the negatives, but it is so much more pleasant to focus on the blessings!
In a sense, though, so much of life now feels like we are living in a holding pattern. It seems we are always waiting -- waiting for the next appointment; waiting for the next scan; etc. Right now, we are waiting for an appointment with the Palliative Care doctor. I would like to see what options we can have for non-narcotic pain control. Our oncologist said that she is well versed in narcotics, but beyond that is outside of her expertise; however, she agreed to give us the referral to the Palliative Care group so we could explore other options. And so, we wait -- the earliest we could get in to see her is the 21st -- one more week.
Then, we wait for a new scan. That is scheduled for the last week of this month. After the scan, we wait a couple of days for the results. Wait.
In this stage of life, there is a completely different perspective that goes along with the second half of Proverbs 27:1 where it says, "for thou knowest not what a day may bring forth." We have to take each day as it comes, and not a moment before. We never know whether we will be waking up to a good day physically for Trent or a rough one. We don't know until the moments arrive whether his pain meds will be able to squelch the pain or if the pain will trump the meds.
We are making plans for our days as best as we can -- always allowing for the unknown. One of the plans we have laid is the starting of school. We are scheduled to start next Tuesday. The plan is to start light -- just three days the first week, and easy days at that; but then the plan is for a full schedule. That may have to change. To be totally candid, it isn't easy to follow through with this particular plan. The thought of adding one more thing (and a big thing at that) to our daily life right now is a bit overwhelming. I have to remind myself to just focus on the next step.
Right now, it is all we can do to plan for Trent's appointments, for work, for church, and for school. Everything else has to be considered 'optional' -- a luxury. It's just the way life is right now.
One of my children let me know this week that life isn't what they want right now. Part of me wants to say, "Get used to it -- That's life!", but I know this season of life hasn't been easy on them, either. However, the reality is just that -- This is life right now, and we can't change it. We can only work on doing the best we can and to keep our focus on God and on what is good. Said child and I discussed focusing on the blessings. He came up with many negatives -- I tried to counter them with positives. Even though some of our days may be rough, there really are so many blessings. God has been providing for our needs. We have good friends who give of their time to help us. We have employers who have been more than understanding. It is easy to look at the negatives, but it is so much more pleasant to focus on the blessings!
Wednesday, July 31, 2013
Tough Terrain
I tend to refer to this season of life as being a path. When I think of a path, I think of something that - even if it is full of unforeseen twists, turns, descents and climbs - is well defined and relatively free of obstacles. This is not that.
What we are walking is rough and jagged. It feels like each day - every step - holds a potential for harm. This trail is full of rocks and potholes and the way is not clearly seen.
It seems that each time we think we have some aspect figured out -- some solution to an issue we're facing -- things change.
Trent's oncologist called to talk with me last week. Though she may not agree with our choices, I do believe that she genuinely cares. She asked me questions to better understand our perspective. She shared her concerns and expressed her desire to be a help to us. We meet with her for our next appointment this coming Friday.
My emotions have been in hyper-drive. It is so hard to see him in such pain! When there is something I can do to help alleviate the pain, it is easier for me to deal with; but when I am not able to do anything for him, the weight of the burden is multiplied. I took the kids to hear a slap-stick comedy / folk music program at the library last Friday. Who knew that such an event could cause floods of tears?? Keeping my Quiet Time with the Lord is essential to maintaining any sense of emotional balance. Some days, it is hard to get that time -- Appointments so early that I can barely pry my eyelids open in time to get out the door to get there, the busy-ness of the day, trying to get even just the necessities done, and by the time everyone is settled for the evening, I have to fight to keep my eyes open. As much as possible, I try for earlier vs. later. There are days when I mandate that the kids stay in their rooms for a half hour in the middle of the day -- Mom's Quiet Time. It is imperative that Mom has that time.
Recent events have caused me at times to try to envision what lies ahead. I know I can't do so, and trying to is unproductive at best. There is only One who knows what the future holds, and I purposefully surrender the future - and all its unknowns - to Him. Whatever the days ahead may hold, I know God holds us in His hands. He is working according to His Will and plan. We are safe in His care.
What we are walking is rough and jagged. It feels like each day - every step - holds a potential for harm. This trail is full of rocks and potholes and the way is not clearly seen.
It seems that each time we think we have some aspect figured out -- some solution to an issue we're facing -- things change.
Trent's oncologist called to talk with me last week. Though she may not agree with our choices, I do believe that she genuinely cares. She asked me questions to better understand our perspective. She shared her concerns and expressed her desire to be a help to us. We meet with her for our next appointment this coming Friday.
My emotions have been in hyper-drive. It is so hard to see him in such pain! When there is something I can do to help alleviate the pain, it is easier for me to deal with; but when I am not able to do anything for him, the weight of the burden is multiplied. I took the kids to hear a slap-stick comedy / folk music program at the library last Friday. Who knew that such an event could cause floods of tears?? Keeping my Quiet Time with the Lord is essential to maintaining any sense of emotional balance. Some days, it is hard to get that time -- Appointments so early that I can barely pry my eyelids open in time to get out the door to get there, the busy-ness of the day, trying to get even just the necessities done, and by the time everyone is settled for the evening, I have to fight to keep my eyes open. As much as possible, I try for earlier vs. later. There are days when I mandate that the kids stay in their rooms for a half hour in the middle of the day -- Mom's Quiet Time. It is imperative that Mom has that time.
Recent events have caused me at times to try to envision what lies ahead. I know I can't do so, and trying to is unproductive at best. There is only One who knows what the future holds, and I purposefully surrender the future - and all its unknowns - to Him. Whatever the days ahead may hold, I know God holds us in His hands. He is working according to His Will and plan. We are safe in His care.
Friday, June 28, 2013
First Steps and Light on the Path
Those first days out of the hospital were days of adjusting. We had to figure out exactly how we would set things up to be best for Trent. The kids had to adjust to being back home.
My parents came for a couple of days to celebrate Nathaniel's 12th birthday. They kept the kids at the hotel with them and we came and went as Trent felt up to doing so.
Healing was slow, but day eleven was the turning point. We were seeing noticeable progress. Now we just had to wait for the next steps in the plan -- scans and a consult; then we would meet with our oncologist again. We were eager to have these steps done -- it would feel good to have a concrete plan in front of us.
We were going through life as normally as possible. Making plans as best we could, but everything was tentative.
Funny how that works -- The truth of the matter is that all of life is unknown, but we certainly don't live like it is. We live like we know what will happen, but the reality is that we don't know. Something like this just puts that fact in front of us and forces us to acknowledge it more.
The days went by while we were waiting to hear about our next appointments. Waiting is not always easy -- especially for someone whose brain rarely - if ever - shuts off. I want to see the big picture start to finish. I am a problem solver by nature, so as different scenarios pop up in my mind, I naturally try to envision plans and solutions. It is those moments when I'm trying to think too far ahead that I get overwhelmed. My dear, sweet pastor's wife - my friend - said to me, "It's like you're on a path, and there's a bend up ahead. You're trying to see around the bend, and you aren't even to the bend yet." I knew that was true. God gives us grace for today -- not for tomorrow (because we're not there yet) and not to continually re-live the life-changing moments of the recent past. I had to force myself to turn off that automatic replay that my mind wanted to do -- the replay of Dr. Colbert's words and the replay of those initial phone calls. Those were past. I needed to focus on today.
We also had many opportunities to talk with each other. We talked about focusing on today. We determined that we need to be set on not wasting today by worrying about what might happen tomorrow. We also talked about being thankful through all of what was going on and about the fact that we may never know the 'why' of it all, but we need to make sure we are open to what God has for us through this.
The day came with the phone call for our consult and scan appointments. Finally, it felt like we were moving forward. We were looking forward to this appointment. We would get his recommendation for type, administration, and duration of chemo. What we got was very different. This doctor's recommendation was more surgery. Not just more surgery, but very radical surgery. He wanted to open Trent and remove all visible spots of cancer -- including part or all of affected organs -- he could come out of surgery without a spleen or abdominal lining or gall bladder and minus parts of his stomach, intestines, diaphragm, etc. Following the removal of all of this tissue, they would flood his abdomen with a heated chemo solution for 90 minutes. After that, they would flush it out, stitch him up, and we would be scheduled for 6 months of systemic chemo. My poor husband was floored by the recommendation, and he didn't even look like he could carry on a conversation at that moment. I stepped in and asked a few questions and made a few comments. I kept thinking, "What is there going to be left after you get through with all of this?" This doctor also confirmed that the type of cancer that Trent is dealing with has an extremely low responsiveness to chemo. As we left, Trent was still very overwhelmed by what he felt he was being told that he had to do. I stopped him right there in the hallway and told him that he didn't have to do anything. If he didn't feel comfortable with the surgical option, we wouldn't do it. Period. I would never tell him that he should have done it, either. Much of the rest of that day was spent discussing what the specialist had said. By evening, Trent had definitely decided that he would NOT be doing the surgical option. It was a burden lifted from him, for sure. I would never tell him what he needed to do with this, but I was pleased that this was his decision. We would wait and plan for standard, systemic chemo after we met with the oncologist.
The next step was new scans the next week. We would get those results when we met with our oncologist the week after that.
We had already been discussing the fact that we needed to decide on a plan to support Trent's health while he was going through chemo. A friend had told us that she knew of a chiropractor who dealt specifically with cancer patients. Trent asked me to contact her and get the information. There was a free informational meeting that the doctor was having that evening. At the end of the meeting, Trent told me that he really wanted to know more, and so we set up a consult with the doctor. His treatment uses RIFE therapy. I had read about this before, so I was familiar with the basic concept. After having been told by three doctors that, essentially, chemo wouldn't work but that it was the best they could offer, the thought of doing all that damage to his body and getting minimal - if any - benefit made chemo less and less appealing all the time. Trent was drawn to the fact that there was no physical detriment with this treatment. Finances were the only barrier. Since it is 'alternative' treatment, it will be all out-of-pocket. Dr. Conners said he could start treatment if we could cover the cost of the equipment, and then we could make payments on the balance. The amount they needed was very close to what I had in our 'catastrophic' savings. We decided to go ahead with this treatment plan.
As they started the process with Trent, he looked at me and said, "This is the first time since all this started that I feel like there's hope." Priceless.
We met with our oncologist, Dr. Kubiak, this week. We got the scan results -- one nodule has increased in size by 3 mm, there was no evidence of disease (NED) in the chest. We informed her of our decision to pursue alternative therapy at this point. She disagrees with our choice -- we expected that. She was, however, very respectful with the questions that she asked and the statements she made. She wants to have more frequent scans than she would if we chose the 'traditional' route, and we are fine with that.
So, for the moment, we have a direction. It feels like there is a light on our path. The future is still unknown, but it would be with or without this diagnosis.
I have felt compelled to focus on the blessings. There really are so many of them -- some of them are 'big' and some of them are 'small', but they are all blessings, and I want to be conscious of them.
I sense, through all that we have gone through, that the LORD is asking us to just trust. It is a matter of trust whether we chose this route or the route of chemo, because the majority of the disease in Trent's body is undetectable by scans and there are no indicators in his blood work, either. We just simply have to TRUST. That's not a bad place to be, and I am at peace with wherever God is leading us down this path. God is Love and He is All Wise and All Knowing. We are in His hands, and He will never let us go.
My parents came for a couple of days to celebrate Nathaniel's 12th birthday. They kept the kids at the hotel with them and we came and went as Trent felt up to doing so.
Healing was slow, but day eleven was the turning point. We were seeing noticeable progress. Now we just had to wait for the next steps in the plan -- scans and a consult; then we would meet with our oncologist again. We were eager to have these steps done -- it would feel good to have a concrete plan in front of us.
We were going through life as normally as possible. Making plans as best we could, but everything was tentative.
Funny how that works -- The truth of the matter is that all of life is unknown, but we certainly don't live like it is. We live like we know what will happen, but the reality is that we don't know. Something like this just puts that fact in front of us and forces us to acknowledge it more.
The days went by while we were waiting to hear about our next appointments. Waiting is not always easy -- especially for someone whose brain rarely - if ever - shuts off. I want to see the big picture start to finish. I am a problem solver by nature, so as different scenarios pop up in my mind, I naturally try to envision plans and solutions. It is those moments when I'm trying to think too far ahead that I get overwhelmed. My dear, sweet pastor's wife - my friend - said to me, "It's like you're on a path, and there's a bend up ahead. You're trying to see around the bend, and you aren't even to the bend yet." I knew that was true. God gives us grace for today -- not for tomorrow (because we're not there yet) and not to continually re-live the life-changing moments of the recent past. I had to force myself to turn off that automatic replay that my mind wanted to do -- the replay of Dr. Colbert's words and the replay of those initial phone calls. Those were past. I needed to focus on today.
We also had many opportunities to talk with each other. We talked about focusing on today. We determined that we need to be set on not wasting today by worrying about what might happen tomorrow. We also talked about being thankful through all of what was going on and about the fact that we may never know the 'why' of it all, but we need to make sure we are open to what God has for us through this.
The day came with the phone call for our consult and scan appointments. Finally, it felt like we were moving forward. We were looking forward to this appointment. We would get his recommendation for type, administration, and duration of chemo. What we got was very different. This doctor's recommendation was more surgery. Not just more surgery, but very radical surgery. He wanted to open Trent and remove all visible spots of cancer -- including part or all of affected organs -- he could come out of surgery without a spleen or abdominal lining or gall bladder and minus parts of his stomach, intestines, diaphragm, etc. Following the removal of all of this tissue, they would flood his abdomen with a heated chemo solution for 90 minutes. After that, they would flush it out, stitch him up, and we would be scheduled for 6 months of systemic chemo. My poor husband was floored by the recommendation, and he didn't even look like he could carry on a conversation at that moment. I stepped in and asked a few questions and made a few comments. I kept thinking, "What is there going to be left after you get through with all of this?" This doctor also confirmed that the type of cancer that Trent is dealing with has an extremely low responsiveness to chemo. As we left, Trent was still very overwhelmed by what he felt he was being told that he had to do. I stopped him right there in the hallway and told him that he didn't have to do anything. If he didn't feel comfortable with the surgical option, we wouldn't do it. Period. I would never tell him that he should have done it, either. Much of the rest of that day was spent discussing what the specialist had said. By evening, Trent had definitely decided that he would NOT be doing the surgical option. It was a burden lifted from him, for sure. I would never tell him what he needed to do with this, but I was pleased that this was his decision. We would wait and plan for standard, systemic chemo after we met with the oncologist.
The next step was new scans the next week. We would get those results when we met with our oncologist the week after that.
We had already been discussing the fact that we needed to decide on a plan to support Trent's health while he was going through chemo. A friend had told us that she knew of a chiropractor who dealt specifically with cancer patients. Trent asked me to contact her and get the information. There was a free informational meeting that the doctor was having that evening. At the end of the meeting, Trent told me that he really wanted to know more, and so we set up a consult with the doctor. His treatment uses RIFE therapy. I had read about this before, so I was familiar with the basic concept. After having been told by three doctors that, essentially, chemo wouldn't work but that it was the best they could offer, the thought of doing all that damage to his body and getting minimal - if any - benefit made chemo less and less appealing all the time. Trent was drawn to the fact that there was no physical detriment with this treatment. Finances were the only barrier. Since it is 'alternative' treatment, it will be all out-of-pocket. Dr. Conners said he could start treatment if we could cover the cost of the equipment, and then we could make payments on the balance. The amount they needed was very close to what I had in our 'catastrophic' savings. We decided to go ahead with this treatment plan.
As they started the process with Trent, he looked at me and said, "This is the first time since all this started that I feel like there's hope." Priceless.
We met with our oncologist, Dr. Kubiak, this week. We got the scan results -- one nodule has increased in size by 3 mm, there was no evidence of disease (NED) in the chest. We informed her of our decision to pursue alternative therapy at this point. She disagrees with our choice -- we expected that. She was, however, very respectful with the questions that she asked and the statements she made. She wants to have more frequent scans than she would if we chose the 'traditional' route, and we are fine with that.
So, for the moment, we have a direction. It feels like there is a light on our path. The future is still unknown, but it would be with or without this diagnosis.
I have felt compelled to focus on the blessings. There really are so many of them -- some of them are 'big' and some of them are 'small', but they are all blessings, and I want to be conscious of them.
I sense, through all that we have gone through, that the LORD is asking us to just trust. It is a matter of trust whether we chose this route or the route of chemo, because the majority of the disease in Trent's body is undetectable by scans and there are no indicators in his blood work, either. We just simply have to TRUST. That's not a bad place to be, and I am at peace with wherever God is leading us down this path. God is Love and He is All Wise and All Knowing. We are in His hands, and He will never let us go.
Thursday, October 15, 2009
Even in the Valley . . . .
My youngest son has decided on a new favorite song recently that talks about God being good even in the hard times of life. I'm sure, at his age, that he really cannot even begin to comprehend what the song truly means. He is far too young to have experienced any of those hard times. Part of me wishes for him to never know those difficult seasons of life. The other part of me knows there is so much value -- so much to be learned by going through those difficult times. There is much that can only be learned by experiencing hard things. I also know that life does not happen for very long without those hard things. They do yield good things - if we let them. Psalms 119:67, 71 says: " Before I was afflicted I went astray: but now have I kept thy word. . . . . . It is good for me that I have been afflicted; that I might learn thy statutes."
I'm thankful for a loving, all powerful God who makes those choices for our lives. He knows what is best! I can trust Him to do what is best both for me and for my children. I can pray, too, that my little son will always remember those words which he parades around singing; and that when the difficult times come, he will be looking for the goodness of God -- knowing with all his heart that God IS Good -- Even in the Valley.
I'm thankful for a loving, all powerful God who makes those choices for our lives. He knows what is best! I can trust Him to do what is best both for me and for my children. I can pray, too, that my little son will always remember those words which he parades around singing; and that when the difficult times come, he will be looking for the goodness of God -- knowing with all his heart that God IS Good -- Even in the Valley.
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